My life... or something like it

Tuesday, September 10, 2013

I woke up late Wednesday night/early Thursday morning with a heaviness in my chest. It was hard to breath, I had a sharp pain on the left side of my chest through to my shoulder blade and then down my left arm, my heart was racing. I was sure I that I was having a heart attack, or was at least close to one. I took my pulse, 120 bpm, and rising.

I looked at the heart rate reading, and the clock. I took my pulse again, 127 bpm, it was getting harder to breath and the pain in my chest was getting worse. I looked back at the heart rate reading, and then back at the clock, it was shortly after 2:30am. I sat down on my bed, afraid to go to sleep, but not wanting to wake my husband and children. Decided to try some slow, deep, meditative breathing to slow my heart rate, something I have been doing, rather successfully, for the last six months, when I feel my heart rate increasing in-spite of my heart medication. However, this time it did not work, well, not very well anyways. I checked my pulse, down to 117 bpm, checked the clock, it was roughly 2:45am, I woke my husband. After him checking my pulse, twice, he convinced me it was time to go to the hospital and have them check me out.

We arrived at the hospital shortly after 3am and I was taken into triage immediately. There they took my pulse and blood pressure before hurrying off to grab an electrocardiogram (EKG) machine. After my EKG I was taken to a room and put on more monitors, after a little while a doctor came and reevaluated my chest pain and gave me some nitroglycerin. Soon the pain went away and my heart rate decreased. Once my heart rate had stabilized, I was given yet another EKG, around 7am the doctor came back in and informed me that I was being admitted to the hospital. There were changes in my EKG from when I arrived to when my heart rate was stable, I would be seeing a cardiologist who was to determine the best course of action.

Once in my hospital room I was connected to a new set of machines for monitoring and told to wait, however, while waiting, my chest pain came back and required two doses of nitroglycerin to even begin to cut the pain. Around 11am the doctors finally allowed me to eat, but on a "heart healthy" diet, shortly after I ate the first cardiologist came in, he told me that there are three main tests that they do to people who display changes in their ekgs: an echocardiogram, an angiogram and a nuclear stress test. He went on to tell me that while an angiogram is the "gold standard" for diagnosing issues with the heart, he felt that without further imaging the benefits didn't outweigh the risks, that first he was going to have an echo done and a variation of the nuclear stress test called a lexiscan over a two day period, and then and only then would he believe that the risks of an angiogram outweighed the benefits "for someone of my age and fitness level".

Things went rather slowly from there, although some key events happened, I was started on medication for my heart rate, blood pressure and a blood thinner, I had my echocardiogram, and had the first day of my stress test, the "resting" portion of the test. On my way back from the test there was a significant lighting storm that knocked out power in the hospital scaring the poor transport nurse and other personnel in the hallway when it took almost a minute for the back up generators to kick on, and even then only minimal emergency lighting and elevators kicked on. When I got back to my room I was given a glowstick for a "light" in my room until power could be restored, meanwhile nurses were scrambling to plug necessary equipment into "red plugs" as those were the only outlets that were part of the system now on the backup generators.

The next morning I was taken in for the second portion of my stress test, where my cardiologist exclaimed to the technician running the test "you made her have the same t wave inversions that we saw on the EKG when she arrived!" Once the test was finished I was taken back to my room and asked to wait, again. Several hours passed before the cardiologist returned, and when he did we was accompanied by another cardiologist. They explained how the arteries on the heart worked (above, top) and supplied blood and that during my resting test the blood flow in my heart was normal (above, left), however during the "stress" portion of my stress test the lower back portion of my heart displayed reduced blood flow (above, right). These findings coupled with now two abnormal EKGs warranted an angiogram to be done in the morning. They went on to describe the procedure and explain that if possible they would fix any abnormalities they found at that time instead of doing a secondary procedure, however, since the area of concern was at a hard to reach area, there was a chance that, depending on what was found, open heart surgery might have to be done.

I was transferred from the regular cardiac unit to the cardiac ICU for further monitoring. Once there I was put on a nitroglycerin drip and a heprin drip (a blood thinner), later they added in a saline solution, and an extra iv site. Morning came and the doctors did my angiogram without needing to do any extra procedures, my arteries are clear, I have no plaque buildups or blockages.

After the procedure I was returned to my room with a radial compression bracelet, the nurses were to remove 2cc's (2ml) of air every 20 minutes as the artery slowly closed its self. However, my body does not work that way and the first time the nurses attempted to remove air I started "oozing", which is of course doctors speak for, I bled all over a pillow. If you wish to see what the bracelet looked like after the first attempt, click here. After my oozing event the nurses decided to wait an hour and then continue to reduce the air in the bracelet at a rate of 1cc every 15-30 minutes, needless to say, it took forever.Eventually the doctor returned and told me that they aren't quite sure exactly what is going on with my heart, that it could be a number of things, one of which was a coronary artery spasm, and that more tests are needed to make a diagnosis. I see my new cardiologist again on Thursday.Here's my official "hospital summary" word-for-word:

REASON FOR HOSPITALIZATION:
The patient is a 29-year-old, Caucasian woman
who was admitted for chest pain with abnormal electrocardiogram (EKG) changes.
For details see dictated history and physical exam report.

HOSPITAL COURSE:
The patient was admitted to the hospital and started on acute
coronary syndrome protocol. Her potassium level was low at 3.4, which was
replaced back to normal. Due to abnormal EKG changes at the time of admission,
nuclear stress test was obtained, which showed reversible ischemia inferiorly.
Cardiology was then consulted and coronary angiogram was performed on
09/07/13, which showed normal coronary arteries. Her chest pains might be due to
coronary vasospasm or endothelial dysfunction. Her echocardiogram showed
ejection fraction 60-65%, no regional wall motion abnormalities noted, the left
ventricle normal in size, trace tricuspid regurgitation. No pericardial effusion. Her
lipid panel showed total cholesterol 177, triglycerides 70, high-density lipoprotein
(HDL) 63, low-density lipoprotein (LDL) 100.

Troponin negative.
Due to her low-normal blood pressures neither nitrates nor
calcium channel blocker was started at the time of discharge.

Sunday, September 8, 2013

When I sat down to write an entry today, I never would have expected to be talking about Laine, an enthusiastic woman whom I had the honor to get to know while pregnant with my second child in 2006. We both frequented a pregnancy and baby site and as luck would have it, we were both due in the same month. As the months passed by we became friends and through the wonder of myspace and facebook, managed to keep in close contact over the seven years since we had met. I don't think I have ever met someone quite like her.

Laine was enthusiastic about Scottish drums and bagpipes, going all around the world to compete in competitions. She also had a great love for the Boston Red Sox, the Bruins and the New England Patriots. However, all of that paled in comparison to her love for her family. She leaves behind a husband and two beautiful children ages 6 and 11.
To be honest, nothing that I say, could even remotely begin to describe how amazing Laine was, and to be honest, I still have a hard time comprehending that she's gone. The facts about her passing are fuzzy, everyone's heard from someone else as to what her cause of death was, we are all currently under the assumption that she slipped and fell down a flight of stairs, breaking her neck. Such a tragic end to such a bright light, the world will be forever darker without her in it.

Tuesday, August 27, 2013

I don't even know where to begin this entry, which is probably why it's taken me so long to write it.

Sometimes life is hard.... sometimes too hard.

There is a day, every August, when all the pain that I felt three years ago comes rushing back, like it never left in the first place. Then I begin to question if it ever left, or if I have just been pretending the whole time.

Every year, we commemorate her passing, just like every year we celebrate her birth, and it kills me.

Each time I hear my kids talk about how much they miss her, it kills me.

Every time I have to explain why I have four kids, but they can only meet three, it kills me.

Every time I leave her out when telling people about my kids, so I don't have to explain, it kills me.

It feels like part of me dies, every time... it feels like I lost a part of me and that I'm never going to get it back.

Every year in August, hell comes to visit, and I never have been strong enough to send it packing on its way.

Tuesday, August 20, 2013

While I've been gone my family and I have been off camping in Eastern Oregon, we enjoyed it quite a bit and were able to even catch a some of the meteor shower.

However, when we returned, real life caught up with us and it was time to go back to the doctors offices, my son to Dorenbecher's Child Development and Rehabilitation Center, and me to get an MRI on my knee to determine if surgery is needed.

For me-- the jury is still out. The imaging center should have results today, and hopefully will have them to my doctor by the end of the week.

Although, my son did get answers... if you can call them answers.
Five, almost six, years ago my son was diagnosed with mild-moderate classic autism through both Kaiser Permanente and our local Education Service District (ESD), he had just turned three. Then, when my son was leaving kindergarten, the ESD and Easter Seals changed his diagnosis to Asperger's Syndrome with Attention-Deficit Hyper Activity Disorder (ADHD) because he had become higher functioning and verbal. When the new diagnosis was changed my son's pediatrician sent in a referral to Dorenbecher's Child Development and Rehabilitation Center, however Dorenbecher has almost a two year waiting list to be evaluated. In the mean time I had my son seen by a pediatric psychiatrist who, as recently as six months ago, confirmed Easter Seal's evaluation of Aspergers and ADHD.

However, since then, the new Diagnostic and Statistical Manual of Mental Disorders (DSM), which sets standards for mental health classifications has been emplamented which redefine Autism Spectrum Disorders (ASDs). With the new classification it completely cuts out all of Pervasive developmental disorder not otherwise specified (PDD-NOS) as well as removing a lot of the higher functioning Aspergers Syndrome. Apparently my son was one of the ones that got cut.

Under the new DSM (DSM-5) his Aspergers Syndrome is now classified as "Social (Pragmatic) Communication Disorder," which according to Autism Speaks it is "to apply to individuals who have deficits in the social use of
language, but do not have the restricted interests or repetitive
behavior you see in autism spectrum disorders" (Answers). Also, his other diagnoses were: Sensory Processing Dysfunction, ADHD, and Unspecified Obsessive-Compulsive and Related Disorder (UOCRD), of which UOCRD is a new addition in the OCD spectrum, and although the doctors noted that his skin picking is a large portion to why he got his OCD diagnosis, UOCRD states that it does not include skin picking.

I'm unsure what to think anymore. Who's right? Who's wrong? All are supposed to be specialists, so which one(s) am I to believe?

Thursday, August 8, 2013

On the first I was honored to take over the head coordinating position for my last blood drive at that school. Apparently the girl who had taken it on didn't realize that organizing a blood drive was a lot of work, whereas I love coordinating and hosting them.

The drive its self went well, we only had a few times when we had open beds and no one to donate, which isn't bad considering that it was an emergency drive due to our state's current blood shortage. They were so low on blood that they actually called in my husband due to his rare blood type. In all our years of donating, we have never had him called in to donate before, its a slightly scary thought.

In the wee hours on the third I finally finished my son's quilt. While there is still A LOT of clipping of seams to be done, I'm happy that the "hard part" is done. Although, I think I may be getting a callus on my hand from all that seam clipping!

I tried it out, it's really warm, and also heavy, I swear it weighs more than Bug! It's also a lot bigger than I was expecting, the site I got the sizes from claimed that the blanket was for a full size bed, but clearly the blanket fits nicely on my queen size bed, above. I hope that when he comes home he likes it, he has no clue what I've been making.

Not my best photo, but at 4am who cares

While making my son a blanket is great, my two little ladies would definitely feel left out if I didn't make them something too, so I first made Aeries a little sun dress, that's waiting for her to come back from my ex's house to be hemmed, and then I made Aurora one too. Each girl was allowed to pick out their fabric and pattern, but they have no clue when they are getting them.

Right: Aurora's dress

Left: Aeries' dress

Monday is always game night with the boys where we play pen and paper based role playing games, we've been going between Shadowrun and Vampires. To be honest, I like Vampires a lot better than Shadowrun, our current mission in shadowrun is so boring that even with adderall I can't pay attention, can't wait until we get back to Vampires.

Wednesday I saw my doctor who FINALLY gave me the thumbs up to exercise as long as it's "no
impact" for my knee. Needless to say I'm excited. I injured my knee in
February and have been not allowed to exercise since, per doctors orders. We FINALLY have enough documentation that the insurance shouldn't be able to deny my MRI and (possible) knee surgery.

Then today, well, today was a lot of fun. My husband and I made raised planter boxes for our postage stamp of a back yard. I like to grow my own herbs and vegetables, but the soil in my garden is horrible, there is only one to two inches of soil before you hit straight gravel. Nothing grows! The trees in my poor front yard are half the size of all the rest in my neighborhood, and they were all planted at the same time! Tired of only growing vegetables and herbs in pots on my patio and porch we built these. They are a variation of Ana White's $10 cedar raised beds, however, lumber prices have doubled since she posted the plans, so they cost me a bit more... not to mention I don't have all the fancy tools she does. We made ours with a hand saw, wood screws, wood glue and a hammer.

We're almost finished with them, but I realized I was out of staples before I could put down the liner. Hopefully once we're finished we can finally re-take our back yard, which the rental agency has let go completely to weeds because the maintenance doesn't want to bother with spreading weed and seed. I also realized that I pay more in rent than I would for a house payment... I could actually buy a house worth $185,000 on a 30 year loan, with $20,000 down for how much I'm paying in rent. Problem is, I don't have $20,000 to put down since my divorce cost me $30,000 only 4 years ago.

Well that's all for now. Hope your month is going good for you as well.

Wednesday, July 31, 2013

These are the kind of questions I get asked when I want to read the instructions on how to put together a new canopy/gazebo for our backyard. Mind you, my hair color may be blonde, and I may have frequent blonde moments, but I'm usually smart enough to know not to assemble a gazebo in my living room. Mind you it would be pretty funny if I had assembled it there, but that of course would be a whole different blog post.

Today was a nice day, one that went relatively slow.
I woke up this morning, at around 6 or 6:30a, probably because I continually forget to delete the alarm off my phone, the calendar app and I have an ongoing argument on when things should be alerting and when they shouldn't be. However, I got to lay in bed and pretend I was actually asleep, since my husband, next to me, and his best friend, on the couch downstairs, were still asleep and getting up would have woken them up. I gave up after a few hours and started to get ready for the day anyways... I can't stand laying in bed for long periods of time, especially after all those months of bed-rest I've endured over the years. After breakfast my husband's best friend Austin went off to a meeting with his coach here in town, and we went off to a much needed massage.

After two weeks of quilting practically non-stop, there were more than a few knots for the masseuse to work out of my neck and back but one of the main reasons I needed to go was to try and work on my injured knee. I attempted a slight jog on my elliptical the other day, with my brace on, and still managed to make my knee hurt like crazy to the point I don't want to walk. Still waiting to see the doctor on what we're going to do next, still waiting on insurance to see if they're going to pay for an MRI to see if I need surgery, no MRI, no surgery, no fixed knee. It's an annoying reality, in the six months that my knee has been injured I have gained roughly 30 lbs, and it shows. I am no longer in my cute, size 5 jeans, but am instead in a size 10 jeans that are tight. It's disappointing, I am disappointed in myself mainly, how did I let myself get so big?

My weight is now in the range where the doctors give me that "look" and occasionally ones will drop the F bomb and call me fat. I'm not kidding, I've had a doctor tell me that I was fat because of my weight, which happens to be 180lbs to my 6' figure, putting me at 24.4 for my BMI. The CDC states, For your height, a normal weight range would be from 136 to 184 pounds" ("Adult"). I blame the media for teaching us that a woman with a size 10 figure is fat. They have created an outlandish ideal by making our regular models wear a size four at most, and a plus size model be between the sizes of six and fourteen (Jones). If you think I'm kidding about those statistics, you should read the article written by Madeline Jones labeled "Plus Size Bodies, What is Wrong With Them Anyways?"

I'm going back on my healthy foods only diet, I think the mixture of allowing myself to drink mountian dew when I was working 12-18 hour days and eat cheez-its has lead to my decline. You know what's also sad, the only foods I could think of that I have been eating weren't healthy to mention, were oreos, cheez-its and mountain dew, what does that say about how outlandishly unhealthy they are? I eat mainly fruit, but since my gallbladder removal on halloween I can't really eat much of anything, so I guess my small amount of calories have really got to count from now on.

Speaking of fruit, my husband and I got in the garden today and re-potted half a dozen plants today, I really hope that they like their new homes, as I am running out of pots to put them into! I cannot wait until I can get my raised beds put in my back yard, I hate having to put everything in pots because the lawn guy sprays everything in the front yard with insecticide and I refuse to eat, or let my children eat, whatever random chemical he's using. He is after all the genius who installed a light switch upside down and then had to come back twice to figure out how to install it the correct way. I can't wait to own my own home... now if only I knew what state I was going to end up settling in after I'm done with college. I'm kind of excited to see if I get the DoD scholarship for the job in Virginia, I've never been that far east, and I miss being able to see my niece since she moved over there.

Hope you've been enjoying your week. Sorry my post got a little bit away from me. Guess that's what happens when I just write what I think, as I think it. I blame the ADHD. Night guys.

<3 Marvel

Works Cited

"Adult BMI Calculator." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 15 Feb. 2011. Web. 31 July 2013.

Monday, July 22, 2013

Once again I am here, waiting, at Dorenbecher for my son's appointment at the Child Development and Rehabilitation Clinic. They are going to tell me what I already know, that my son is autistic, but this time they are going to tell me what type of services he qualifies for and then I get to wait. I get to wait to see if the insurance will pay for the services and then, and only then, will Dorenbecher schedule an appointment for him to receive said services. This wait can last from days, to months, in fact even though my son has been seen here at the CDRC before, we still had to wait 18 months for this appointment.

Between every specialist, we are referred back to the waiting room. The appointment blocks to see these specialists are insane, either you show up at 7am and your appointment goes until noon, or you show up at noon and your appointment is until 5pm, ours is the later of the two. However, Dorenbecher is one of the best childrens hospitals in the state, so people are here in droves, with children who have all sorts of disabilities and health issues. A child with down's may be playing with a child who has a feeding tube in their nose, you never know, but my autistic son generally prefers to play on his own. Nothing new here.

Show up early and fill out these forms, after a short interview we'll decide if you should come back in a month or not. Like my son could be quantified by a Always, Sometimes, Never rating scale questionnaire, unless some real time is spent with my son they will never know the complexities of him and his personality. All they will ever know is if he fits into a standardized box.

*sigh* I hate this place.

We're coming back next month for an IQ test. Apparently his "learning is highly varied."

Shriner's Hospital on Friday for his feet, at least they have a games room so that he's entertained while we wait.

Why document my life?

In early 2011 a friend suggested that I should do a 365 to document my crazy and hectic life, which I have always been quite open about. In my mid-twenties I was already the mom to three children, one of whom is autistic, and had gone through a bitter divorce and custody battle with their father.All of which would have been enough to document how crazy and hectic life can be, but my new husband and I had also just lost our youngest child to SIDS only five months earlier.

This blog documents my successes, and failures of overcoming crippling grief, overwhelming social anxiety, and crushing depression while trying to be the best mom possible to my three surviving children. Some days my only successes were getting out of bed, others were going out side of my house long enough to pick herbs from my (neglected) garden.

Over time my successes became bigger than my setbacks and I was able to reenter society. Since starting this blog I have gone back to college, obtained honors in three Associates Degrees, and am now working towards Bachelor’s Degree.

I hope that one day, if I’m lucky, I will be able to look back at this blog and see someone who literally looked death in the face and said, “This will not be the end of me, because I know that no matter what life may bring, and how hard life may seem, I am stronger than anyone gives me credit for, including myself. And I know this, because I have three amazing children who depend on me to teach them that success does not mean that one will never fall down, it means that even after one falls that they have the strength to get back up and try again.”